19 August,2026 08:34 AM IST | Mumbai | Vinod Kumar Menon
Shraddha Bhore with her parents, Sheetal and Yuvraj, at their home in Ghansoli, Navi Mumbai. Pics/Sayyed Sameer Abedi
"Earlier, Shraddha would tie the rakhi herself and immediately demand a gift. She would wait for her brothers and tease them. For the last three years, that has been missing from our lives," says her mother, Sheetal, 38.
Shraddha was diagnosed with Subacute Sclerosing Panencephalitis (SSPE) in 2024. Today, she cannot walk or speak and needs constant care.
Shraddha, the only daughter of Sheetal and Yuvraj Bhore, 42, grew up in Sector 5, Ghansoli. She scored 72 per cent in Class 10 and enrolled in a fashion designing course. But her real passion was dance.
Bhajirao Wagmore, Shraddha's uncle, speaks about her condition
The family had begun imagining a future for her that included a career, marriage and the dancing she loved. She was engaged in 2022 to a young man known to the family. Then, in March 2023, everything changed.
March 2023: A flu-like illness. Routine blood tests were negative, according to the family. Over the following months: Her walking became difficult, speech slowed, balance deteriorated, and she began falling.
2024: Cerebrospinal fluid was sent to NIMHANS, Bengaluru.
Diagnosis: SSPE, a rare, progressive neurological disorder associated with persistent measles virus infection.
Shraddha Bhore, 20, is supported by her mother, Sheetal, as she struggles to walk
"We initially thought she may have fallen sick because of exertion. We were worried about the sudden jerks and could not understand what was happening," says Yuvraj.
The family consulted several doctors, including a psychiatrist, before the diagnosis was confirmed.
"We consulted every possible doctor, hoping someone would diagnose the reason for my daughter's deteriorating condition," Yuvraj says.
At a South Mumbai hospital, Yuvraj says a senior neurologist told the family that Shraddha might not survive six months.
Shraddha Bhore's parents, Sheetal and Yuvraj Bhore, at their home in Ghansoli
"He threw the file on the table. My heart got pierced. It felt like the whole hell broke loose," he recalls.
The family decided to continue treatment.
"My wife and I could not accept this. We decided not to give up and pursued every possible treatment for her. She has now surpassed the six-month prognosis and is showing some signs of improvement," Yuvraj says.
The family has arranged a special bed and physiotherapy equipment at home Shraddha undergoes regular therapy in Bhandup and requires constant supervision. Yuvraj says the family has also pursued a treatment involving injections into her spine at regular intervals.
The Bhore family's home in Ghansoli, Navi Mumbai
Fourteen injections have been administered so far, he says, with the dosage increased over time. The family believes the treatment has slowed the disease, though its effectiveness would need to be assessed by her treating specialists.
Shraddha cannot speak or walk and cannot be left alone. Her family has learnt to read her expressions and cries.
"She is unable to speak or utter any word, but when she develops pain, she screams. We understand that she is suffering," says her uncle, Bhajirao Wagmore.
The family says cough and congestion are particularly worrying because of the risk of respiratory complications.
Shraddha once made rangoli, danced and looked forward to Ganpati, Diwali, Navratri and dandiya. Now she can only watch the celebrations.
"She used to make rangoli. She loved dancing and dandiya. She would enjoy Diwali and Ganpati. Now we celebrate, but it is not the same. The fun is missing," says Sheetal. "She loved dancing. Today, that is only a past memory."
The Bhore family says it has spent more than Rs 26 lakh on Shraddha's care.
Rs 26 lakh+
Spent on treatment so far, according to the family
14
Spinal injections administered, according to Yuvraj
Constant
Supervision, physiotherapy and caregiving
"We have spent more than Rs 26 lakh. We are ready to spend more. We will do whatever is possible. All we want is that Shraddha should be comfortable," says Yuvraj.
The Bhores say they have approached Mantralaya and met the CM and DCM seeking assistance for families affected by SSPE.
Yuvraj says the family received Rs 25,000 a month for four months through the CM and Deputy CM relief funds, but the assistance was later stopped.
Through the SSPE Maharashtra Group, the family is seeking:
>> Sustained financial assistance
>> Early diagnosis and greater awareness
>> Specialised rehabilitation
>> More government-funded research
>> Better treatment and preventive measures
"If the govt could ensure vaccines within such a short period during COVID-19, then why can't SSPE and these children be taken seriously?" asks Yuvraj.
For the Bhores, the cost of SSPE goes far beyond Rs 26 lakh spent. It has meant watching their daughter lose her independence, education, dance and ordinary family celebrations. "This disease should never happen to anyone. When even one child in a family is affected, the entire family goes into depression and suffers tremendously," says Yuvraj.
"We want the government to develop a vaccine or medicine for this disease so that future generations and children can benefit." For now, the family continues to care for Shraddha, pursue treatment and hope. Their greater demand is that other families should not have to wait until a child loses the ability to walk, speak and live independently before the system takes notice.
Shraddha's fiance has continued to stand by her, the family says. When her condition worsened, they told him he could move on. He refused. "We told the boy that Shraddha's health condition was not good and that he should call off the engagement. But he is ready to wait for years, until she recovers and they can marry," says Wagmore. There is no certainty about what the future holds, but the family says his decision has given them another reason to hope.
